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Pos1964

This is hell!

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Well,

Finally some time to post an update.

Last Friday, my partner took his second dose of fresh shrooms, 15 grams. Had a not so nice trip but with the goal in mind he handled it. Unfortunately that night and the day after he had a large amount of attacks every 1,5 hour. High kips mostly.

Even today he still has them although they seem to be milder.

We don't know if this is "normal", maybe we were to exited last week and now the beast is letting us know he's still here.

A bit of a disappointment but we'll keep busting. Sure there comes a time he will be PF for more than one day....... I hope!

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Many folks, myself included, experience an increase in frequency and intensity post-dose. But if he's anything like me, that will quickly settle, and the pain-free time will soon begin to stretch out.

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Many folks, myself included, experience an increase in frequency and intensity post-dose. But if he's anything like me, that will quickly settle, and the pain-free time will soon begin to stretch out.

Ditto

David

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It seems more common that it goes that way.  I have been fortunate in the past in that it worked quick after only a few post dose hits.  This time around it looks like a multi dose is gonna be needed.  Everyone has some differences it seems.

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Hi all,

Well, it's been 4 days now since the last (2 nd) bust and still no improvement.

Attacks keep coming with high kips (9 or 10) and low kips (5-7). Especially at night.

Don't understand why it isn't doing anything this time. He had a full dose of fresh shrooms (15 grams), did the Red Bull, the coffee and the oxygen.

At daytime he is also getting hits, 4 or 5 times a day. Sure, previous it were 8-12 attacks but last week, after his first dose, he actually got one night of sleep without any hits. This time around it looks like he's back from where he started before busting at all!

Does anybody has these same experiences? We're kind of desperate now  :'(

Please help!!!

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So sorry to read this, I have been there myself.  Hopefully some more experienced folks will come along shortly with some ideas.  I am sending pain free thoughts your way!!!!

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Still going on, although it's hard! Since the last dose he hasn't had any relief at all. He's tired, I'm tired but we have to hold on to this treatment. We both still believe this will work finally.

Searching this site everyday, reading as much as I can, just to see if we can learn more. We also ordered the Optimask, thanks to CHFather, as far as I can see, he knows everything about oxygen (no offence to other members).

We've found out that once the oxygen has prescribed, you are send home and just have to figure out yourself how to use it. For example, we were told he had to breath the oxygen for no longer than 15 minutes at 7L/pm. Now we know that is way to low and breathing now at 12L/pm (that's the highest the regular can).

We didn't receive the Optimask yet but that should be delivered in a couple of days now.

Meanwhile we have to deal with the hits, coming all day, everyday and never completely go away, it keeps hanging at kip 4.

Saturday he's taking his third dose, hope that besides the slap backs, he will finally get some relief soon.

All tips are welcome! :)

PS

he told me once "I'm alive but not living"

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Thank you for the compliment, POS, although I can say with no false modesty that everything I know about O2 I learned from other people here.

I hope you get that O2ptimask soon and it helps.  Meanwhile, please consider this advice from spiny from a previous page of this thread:

>>>Until you get a higher flow you could try this: Remove the bag from the mask. Close a trash bag, unscented, tightly with a rubber band or tape. Now cut a small hole in a corner and attach it where the original bag was attached, using tape. Turn on the O2 and let the bag fill up. During this time, hit the energy drink. Start breathing the O2. The larger reservoir will allow for deeper, faster breathing. When the bag gets low on O2, drink some more of the drink while it fills again. Repeat. If the original bag is easy to remove (it was on my unit) and reinstall, then you have not damaged the original and can reassemble with no loss of equipment. Might be worth a try for an attack. Just be sure to set it up in advance. And stay on it for several minutes after the attack ends! Just breath normally during that time.<<<

alleyoop said the same thing at another thread, with less detail:

>>>The inadequacy of a 15 lpm regulator is easily compensated for by using a larger reservoir bag.  You can take a large freezer bag or turkey bag and tape it securely in place of the bag that is supplied.  That way you have plenty of pure 02 to draw from.<<<<

It sounds as though the doctors might have frightened your sufferer a bit about oxygen.  Be sure he understands that he'll get the best results if he inhales deeply and more rapidly than his normal breathing, and if he forces as much air out of his lungs as possible each time he breathes out.  Not to the point of becoming dizzy, but as close as he can get.  If possible, inhale through the nose and out through the mouth.

Aborting them is not as good as preventing them, of course, and we're all hoping that Saturday's dose will at least be the start of real prevention.

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@CH Father,

Thank you for the response. We've already made sure that he is getting the maximum oxygen as possible with 12L/pm. Also used a larger bag in the way you described above. It does help a little.

Meanwhile he's on oxygen almost 18 hours a day, he's so tired! He called in sick this morning and he will be busting today. Fingers crossed it works better than the previous dose. Still hopeful!

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@Brew,

No, he quit all medication 2 weeks ago before the first bust, except for the oxygen.

He went to the doctor today and got morphine, 30 mg ones a day.

I already saw the list of medication that might block the effect of the shrooms, morphine was on it.

Since he had almost no sleep at all last week, he took them anyway about 2 hours ago, we know that's not helping the busting but he is so very tired. We planned on busting today but now decided to do this tomorrow. Hope the morphine has no influence anymore by that time.

Fingers crossed :-/

Another thought came to mind, my partner has chronic CH, most of the time he can handle the attacks with oxygen and Imigran, a couple of weeks ago that changed, it changed in that way that the attacks became more frequent and more severe. His neurologist decided an injection in the neck was necessary. After the injection there was hardly any relief so we searched the Internet and came across clusterbusters.com. We've read a lot and decided to try the shrooms because the attacks kept coming more frequently, more severe. Now I'm thinking that he's not only chronic but periodic too, is that even possible or am I just desperately guessing?

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Now I'm thinking that he's not only chronic but periodic too, is that even possible or am I just desperately guessing? 

POS, Yes, most people with chronic CH seem to also have cycles within the chronic pattern.  There is an article about that by Dr. Andrew Sewell (a CH researcher), but for some reason his website is now blocked and I don't know where else to find it.

I really, really hope the morphine helps . . . for most people, it doesn't do much more, if anything, than take some of the edge off the pain.  I don't know whether waiting just one day after taking it is sufficient for busting.

I wonder whether he would be a candidate for the procedure that is discussed at this thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1352734527

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@CHFather

Thanks for your answer, at least now I know I'm not hysteric  :), thinking he could have both. I'm personally not very happy about the Morphine but I understand he wants to get some relief, even if it is for just one good night sleep. We sure hope the Morphine is out of his system tomorrow, he wants to bust anyway.

About the treatment in the link you attached, we have a similar one in the Netherlands. It's still experimental here, they are discussing with insurance companies now and expect that early next year they can start the treatment (operation). Jan, my partner, has been signed up for it by his neurologist and is on top of the list. At first he was very exited about it but now has some doubts (I think that's normal). He actually hopes the shrooms will work so he won't need surgery.

Here's a picture of the electrodes that will be placed under the skin at the nerve on the back of his head, the battery will be placed in the belly.

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Well, no busting yesterday, Jan is sick, I don't know if he's sick from the Morphine (which he already stopped taking) or is just having the flu.

Anyway, we plan to bust tonight if he's feeling better.

Last week he had a bad experience with the shrooms so he is a little anxious now but still determined to follow this road. By now I strongly believe he is in the episodic phase because he is getting hit more frequent and severe than "normal".

We have to break that cycle first before working on the chronic part.

Although it's not an easy road right now, he says he does feel a "change" in his head, as if the beast is stomping around in his head, not only on the right side. For him it means the shrooms are doing "something" in a positive way.

Hope he's feeling better tonight  [smiley=thumbsup.gif]

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Hope the "change" is a good sign of positive things to come.  Feel well, trying to send pain free vibes your way, but I am pretty exhausted myself.  But trying!!! 

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At first I thought, or hoped, that Jan had the flu but what I was afraid of is true. Jan has a drug poisoning by Imigran! He threw up all day and the cluster just didn't go away, not even for a second!

I warned him about the amount of Imigran he took but still took 9 injections today!

I was so desperate that I called the doctor, told her what was going on and fortunately she came right away.

She explained to me that the Imigran constricted the blood vessels, like any CH knows.

Because of the amount he took today, the vessels didn't dilate anymore, which caused the constant headache.

She gave him two injections, one with 10 mg Morphine and one with 5 mg Dormicom.

He's in a deep sleep now and I hope it stays that way, without any hits tonight, so he can get some necessary rest.

This is definitely the reason to quit with the Imigran at all, that was also the reason why we went searching for alternatives, which led us to this site!

A month ago we thought it couldn't get any worse, how wrong we were.

I'm so glad we found this forum and the good advice we get from all of you who also suffer or has somebody he/she cares about that suffers from this horrible condition!

I really don't know what he would have done if we didn't find this site, especially now, when the attacks are worse than ever.

Many, many thanks to all of you!

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Wow, nine shots of imigran?

yes I'm sure you know how dangerous that is. Serotonin syndrome is very dangerous. I'm glad he's ok.

Even mixing busting with imigran or any of the triptans is dnagerous. They all work in similar ways and is just one of the reasons for a break between psilocybin/LSD and triptans.

I dont know what kind of shot the doctors gave him during that nerve shot treatment, but if it contained steroids like some do, that shot may have had some blocking issues with the mushrooms. I dont know how much time there was between the shot and the dose but one reason for the shot is that it's "long lasting" and those steroids can take longer to clear the system than the usual 5 days.

I'm sorry he is in such a desperate place with these attacks. Even in chronic cycles, yes it's common to have "high cycle" periods as well as low cycle periods over the year. Many times they follow the seasons just like with episodics.

Yes the morphine will block the psilocybin. And longer than a day. He also used (alot of) imigran recently.

For best results he should be away from both narcotics and triptans for at least 5 days prior to busting.

I know how difficult it can be, waiting, especially without an optimum 02 set up.

I would hope that when you get the proper set up, he will be able to get a little more rest, and feel stronger, and be in a "better place" for his next dose of psychedelics.

Best of luck

Bob

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Hi all,

Back again with an update. Jan felt much better yesterday after no medication at all! Sure he got hit all day but with the oxygen he pulled himself trough. Last night he busted 10 mg of fresh shrooms and he had a not too bad trip. Woke up only 3 times in the night. Today he wrote  all the hits down, they went like this:

6-6:45 am.         Kip 10+     Oxygen

8:50-9:25 am.    Kip 9-        Oxygen

10:50-11:30 am. Kip 8         Oxygen

1:00-1:30 pm      Kip 7+      Oxygen

3:05-3:50            Kip 9,5     Oxygen

Right now he's asleep so I'll just let him be. He needs that rest.

After the first time he busted he had slap backs for 14 hours in a row with no relief in between at all, so it looks like this time the slap backs are milder.

Also, today the Optimask arrived, I'm so curious if he starts using it for the first time.

Call me stupid but after assembling I've tried it myself, just to see what happens when he exhales, and boy, what a difference with the masks we always get! we usually tape the "old" mask so no room oxygen can get in but because of the small bag that comes with it, it seems the bag partly fills up with room oxygen anyway.

@bob,

Thanks for your input. Indeed it's very hard to get through without any medication and although he didn't manage to wait 5 days, he did bust yesterday.

I'm not sure if the injection in his neck contained steroids, as far as I can recall it was Lidocaine, he got that injection in June.

So I guess that should be no issue anymore.

@Birdman,

Thanks for the tip, I called the doctor yesterday and this week he will get his blood checked for Vitamin D.

Now I'll just wait and see if the Optimask will give him quicker relief  :)

@Mercedes,

Thank you for your kind email, I hope your daughter will have a lot of PF time :)

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Pos,

So glad to know that you have the Optimask now! [smiley=tekst-toppie.gif] It should make a difference in the length of time it takes to abort and save some O2 as well! Be sure to remind Jan to hyperventilate and exhale with force at first. As the pain recedes, return to normal breathing. I forgot to do this myself a few nights ago!!! It does make a difference, as I inadvertently reminded myself.

Keep us updated! And you get a pair of 'angel wings', you have earned them. :)

spiny

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Well, the Optimask is definitely a success [smiley=thumbsup.gif]. Jan used it for the first time yesterday and after a little search how to use it best, he finds the mouthpiece more comfortable at this moment since his nose hurts. There really is a difference, he's getting more 100% of oxygen in his lungs compared to the mask he normally uses.

So far, for most hits, he still has to inhale oxygen for about 45 minutes but there are already a few which were aborted within 20 minutes  :)

He is also still getting hits every 1,5 to 2 hours but they are "different" he says.

Keeping in mind that he didn't detox before taking the shrooms, I do think that we're getting there, maybe he'll have to bust 8 times, we don't care, as long as it helps. I also think the shrooms in combination with the Optimask is a big help!

He's in his 3th day without any medication, no Verapamil, no Imigran, no Morphine, completely nothing, so the next bust should be even more effective!

Only one question still, I have bought some Serotonin capsules, as a support for the shrooms. Should he take them or is it no wise at all to take them? Does somebody have some experience with Serotonin capsules?

@Spiny,

Can you please explain how to hyperventilate before using oxygen? We want to be sure he's doing it the right way :)

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Since spiny hasn't replied yet and it seems Jan is using the oxygen a lot, I will put in my two cents worth and hope that spiny or others will correct and expand.  I do not think that with a 12-15 lpm flow rate (if that's what you still have), even with the larger bag on the O2ptimask, you can actually hyperventilate completely.  But the principle of hyperventilation is to get as much stale out out of the lungs as possible, and as much O2 in as possible.  So, a very full exhale at the beginning, followed immediately by some kind of action that forces even more air out (such as pulling in the stomach muscles and/or coughing), followed immediately by a deep inhale of the O2, is the general idea.  Some people suggest that this is best done standing up -- but of course if he becomes dizzy or lightheaded at all (which would be expected), he should sit down.  True hyperventilation, as practiced by many people with CH, generally causes a feeling of tingling or slight numbness around the lips or in the fingers or elsewhere.  This can come on pretty quickly -- and it also goes away pretty quickly once the hyperventilating has stopped.  But it can be kind of frightening . . . and I'm a little concerned that with the many kinds of meds Jan has taken, and all he's been through, and the large amounts of oxygen he is using, maybe it would not be a good idea.  I'm not a doctor -- just speaking out of concern (and as I've said, I don't think you really can hyperventilate effectively at 15 lpm or less with the O2ptimask bag).  My sense would that for now he should just follow the principle of forcing some additional air out of the lungs on the exhale, and then immediately breathing in deeply on the inhale.  I would be a bit cautious about this (just me saying this), and, for now, keep trying to find a style of breathing that works well for him without overdoing it.  As he feels better and stronger, he could try the more extreme forms of breathing if he is inclined to.  Like I say, just my opinion.

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